No one "at fault"

I am sorry that I haven't been able to keep up with the daily blog posts that I started out writing for Tourette Syndrome Awareness Month.  Life has gotten in the way, as it tends to do sometimes.  We've had trips to the pool, birthday parties, and softball tournaments filling up our days since school has gotten out, and there hasn't been much time for me to sit down and write.  I did want to take a little time to write about something that has been weighing on my mind, though.

Tourette Syndrome can be a spontaneous thing, appearing out of nowhere in a patient that has no known family history of Tourette Syndrome.  Sometimes, it can come on with strep infections, in which case it would likely be PANDAS.  In many cases, however, there is a genetic link.  Heredity does seem to play a role in many TS cases.  However, this does not mean that anyone is "at fault" for their child having Tourette Syndrome.

Recently, a relative made a comment about which side of the family was "at fault" for Monster Man's TS.  This came after another relative started showing signs of having TS, as well.  The comment really grated on my nerves.

The truth is, no one is "at fault" for Tourette Syndrome.  There is no one to blame, and there should be no one to blame.  Sure, TS has its ups and downs; but doesn't most of life?!  While it can take some adjusting to, and the comorbids can sometimes be hard to deal with, Tourette Syndrome can also be looked at as a gift.  That's exactly how we choose to look at it.

Thanks to Monster Man's diagnosis, our eyes have been opened to so many things that we never would've known.  We still would've fallen into that trap that the media wants us to believe, that TS is just the "cussing disease".  We wouldn't have come to know that there is so much more to TS, that coprolalia only occurs in a small percentage of cases.  We wouldn't have come to meet so many new families that are experiencing the same daily struggles (and triumphs) that we are experiencing, friends we've made online and through Camp Twitch and Shout.  We wouldn't be challenged to work so hard to fight for acceptance for other children with tics even worse than Monster Man's.

Most importantly, though, is the fact that Monster Man wouldn't be the person that he is without his TS.  He wouldn't be the 'quirky' little boy that we've watched grow up, always teaching us to think outside the box.  He wouldn't be the little boy that taught us to answer every "Why does he do that?" with "Because he's Monster Man" when we had no explanation.  He wouldn't be the boy that taught us that being so different can be so much more fun.

We are blessed to have Monster Man just the way he is, and he feels blessed to have been given the gift of TS to open his world up to a whole new group of people that he wouldn't have known otherwise.  He has told us that he thinks that his highly vivid imagination comes from his brain working differently (something I've heard from other ticcers as well).  We do not feel that there is someone to "blame"; but if there was, we'd like to thank him or her!

Camp Twitch and Shout

Monster Man had the honor of attending Camp Twitch and Shout last week.  This incredible camp offers kids with Tourette Syndrome the chance to spend a week with other kids like themselves, being themselves and not having to worry about hiding their need to 'twitch and shout'.

When we first dropped Monster Man off at his camp last Sunday, we were a little concerned about how he would do.  After everything we had read about the camp, and after the wonderful tour and friendly staff, we had no concerns about it being the right place for our son, but we weren't sure if he was ready for a week away from us.  We had some many questions about how he would react being away for so long, whether or not he'd have a rage episode, if he'd try to test the limits while swimming, etc.

Thankfully, the counselors had taken the time to get to know everything that we reported might present a problem during the week.  They had come to the camp prepared for anything Monster Man might throw at them, and they did an amazing job giving him what he has told us was 'an amazing week'.

Monster Man loved the camp so much that he was in tears when I went to pick him up, sad to be leaving his new friends behind him.  He is already counting down the days until the family camp in September, as well as making plans for his trip to camp next summer.

I am so thankful that he has Camp Twitch and Shout to help him make new friends like himself and to help him discover that he isn't so different after all (and that being different is a great thing to be!).

The Advantages of Tourettes?!

I know that I mentioned previously that I felt that no one was to blame for Monster Man having Tourette Syndrome, and that I actually felt like he was chosen by God to have it. Instead of feeling that it is a burden, I feel that it is part of what makes Monster Man who he is, that makes him have such a detailed imagination that he can put himself into other characters (like Santa Claus) and not only think about that character as a whole, but go into detail about what being that character entails. The same imagination that let him become Santa is the same attention to detail that allows him to draw out his future race car. His imagination comes alive not only in play but also in his drawings and in his writing. Perhaps the amount of detail he puts into everything stems directly from his TS.

Why do I say that? If you read Jonah Lehrer's article on The Advantages of Tourette Syndrome, you will read that studies are showing that those with TS are more precise in detail, making fewer errors on challenges in eye-movement experiments and more accurately timing the length of time in which objects appear on a screen, than their peers without TS. Perhaps there is an advantage to TS, after all. It doesn't hinder those with TS, making it impossible to reach their goals. Instead, it makes them better at what they do. It adds to their talents. It, as I've said before, makes them who they are.

I've spent a lot of time on the National Tourette Syndrome Association Facebook Page recently, and I have found that many of the members there feel the same way. While the challenges that go along with TS really stink, they can still see the gift that they were given.